Anna M. Tinsley, Star Telegram - Jeff Davis wants his daughter to live a full life — at least a life not riddled with constant seizures and pain.
The Fort Worth man and dozens of other parents were at the Texas Capitol last week to ask lawmakers to help their children.
About two years ago, Davis and his wife, Shawna, got the heartbreaking news that their daughter Karley, who was 1 at the time, had Dravet syndrome, a type of intractable epilepsy.
Now 3, Karley suffers up to 100 seizures a day — lasting for seconds or hours. Some require her to be rushed to the hospital, and many can’t be controlled by the heavy “rescue” drugs she takes.
“She has a 20 percent chance of her not making it to her 18th birthday,” he said. “There is no cure … and no FDA-approved drug for her.”
But he said one option might help Karley: an oil extracted from the marijuana plant known as cannabidiol, or CBD.
“Words can’t describe what it’s like to see your child suffer every day,” Davis said during a committee hearing in Austin, urging lawmakers to make the substance legal. “Then to add insult to injury, [we know] there’s something like CBD oil that could help control her seizures, but we can’t try it because we live in Texas.”
Rep. Stephanie Klick, R-Fort Worth, has proposed the Texas Compassionate Use Act, which would make cannabidiol use legal for Texans with intractable epilepsy if federally approved medication hasn’t helped.
“These families have no other options,” said Klick, a nurse.
The treatment, she said, is legal in 13 states and could provide a new option to some of the nearly 150,000 Texans estimated to have intractable epilepsy.
Marijuana use, for medical or recreational reasons, is illegal in Texas and more than a dozen other states. It is legal in 23 states and the District of Columbia.
This form of the plant lets a patient get the benefits without the high. A different form, THC, or tetrahydrocannabinol, is the psychoactive ingredient that produces a high.
Dozens of people testified last week on both sides of the issue. If the measure is approved, it would be the first time lawmakers legalized any form of cannabis in Texas.
Sen. Kevin Eltife, R-Tyler, filed an identical proposal in the Senate. After testimony was heard on the bills, both were left pending in committee.
Critics say that the bill is a bad idea and that the treatment isn’t scientifically proven to stop the seizures. And they worry that the medicine could wind up in the wrong hands.
“What we do here … will make history,” said Denton County Sheriff William B. Travis, who represented the Sheriffs’ Association of Texas. “This is an irresponsible move.
“Putting low amounts of marijuana oil in a child’s body where the brain is not fully developed is not the way.”
The bills would make CBD use legal by 2017 for epileptics who have found little relief with standard treatments.
Doctors weighed in both for and against the change.
Dr. M. Scott Perry, a pediatric epileptologist at Cook Children’s Medical Center in Fort Worth, supports the proposals, saying that early research shows the oil can prevent seizures and that this drug “holds great promise.”
He said it’s frustrating that he “can’t prescribe CBD to patients in my state, in Texas.”
“Do I feel comfortable now that it is safe enough? I absolutely do,” he said.
Not everyone agrees.
“We need to use science and not emotion when dealing with these life-threatening medical conditions,” said Dr. Angus A. Wilfong, medical director of the comprehensive epilepsy program atTexas Children’s Hospital in Houston.
Wilfong said more research is needed.
“The cart is in front of the horse,” he said. “That’s not the way we want to be in medicine.”
Early studies show that a main side effect is sleepiness.
“We are concerned about the precedent set by state authorization of a treatment that has not been approved through the current nationally accepted methods for treatment guidelines that all physicians follow,” said Dr. Sara G. Austin, an Austin neurologist speaking on behalf of the Texas Medical Association, the Texas Pediatric Society and the Texas Neurological Society.
Federal approval of the drug was a question for many.
“If 13 other states have legalized this … how come the FDA hasn’t approved it?” asked Gillespie County Sheriff Buddy Mills, representing the sheriffs’ association.
No matter the criticism, Paige Figi is a believer.
She traveled from Colorado to Texas last week to share the story of her daughter, Charlotte, and what the oil has done for her.
Figi said the seizures were constant — dozens a day. She and her husband tried medicine after medicine on Charlotte, each of which failed. Her condition deteriorated so much that she couldn’t even swallow.
They tried the CBD, putting it in Charlotte’s feeding tube.
The seizures dropped from about 1,200 a month to one or two. The girl, now 8, began developing again, doing things that her parents weren’t sure were possible.
She’s out of her wheelchair and can play with toys, laugh and dance, a reversal from the listless girl who didn’t walk or talk and was racked with seizures.
The high-CBD oil has since been named for her — Charlotte’s Web.
“There is an absolute urgency” for Texas to allow this, Figi said. “This is a very responsible bill that hurts nobody and helps many, many people.”
Anna M. Tinsley, 817-390-7610